42 thoughts on “What does it mean to be your own health advocate?”

I believe half the battle in being a self-advocate is understanding whatever the issue at hand is. Often with a breast cancer diagnosis, the person has been thrust into unfamiliar territory and doesn’t speak the language. The most important ingredient to being a successful advocate is to embrace your right to ask as many questions as necessary and as often as necessary until you understand all your options. There are never any “stupid” questions and it’s okay that you don’t have the answers – on one has them all!

I believe being your own advocate means moving past the paralysis of bad news into active participation. If we don’t participate, our voice isn’t heard and decisions are made which may not be the best for our physical and/or emotional health. Once we actively engage in our own health care, we start educating ourselves, asking questions and demanding answers, and making hard choices. Not only are better decisions made, but we take back some control over our lives.

Thanks for taking the time to comment Patrick – mental health advocacy is so important as you point out – you need to know where to find the information and support you need to take care of your mental and physical health

Speaking up for what you need when faced with a diagnosis of cancer – or indeed any illness – and knowing how to communicate those needs to family, friends, and caregivers are the first steps in self-advocacy.

To me, being your own health advocate means asking the hard questions, doing the research, and engaging others (who may be more savvy on advocacy) to help along the way. There’s no shame in asking others to join in the effort, especially if as a patient you are feeling weak and disenfranchised.

It’s important that we be self advocates for our health because who better than us knows what we need? No one else is able to speak to the unique aspects of being a patient. Even for those with breast cancer, we all have different issues we face as patients and need to address them to help others gain a complete picture and understanding of the various challenges we face. For example, some of us have lymphedema, which adds another level of complexity to an already complicated disorder.

The important elements of self advocacy are being educated about the disease/condition, bringing awareness of the disease to the communities that we can influence (whether online or in person, whether through writing, speaking or volunteering), finding the right people to address (those who can actually make a difference), and following up to make sure that steps are being taken to effect the desired changes.

What a great opportunity for you, Marie. I’m sure your speech will be stellar. xox

Asking questions – lots of them. Educating ourselves about things we really don’t want to know about. And standing up for ourselves & what we really need with friends & family. (I’ve never been so good about that last one – don’t want to offend or be bitchy)
I learned to trust my onc. because I double & triple checked everything he told me. I was lucky to have a lot of good resources – nurses & other docs – who I could bounce things off. I now describe my onc as the most trusted man in my life.

Great topic, Marie! To me being your own best self advocate is about patience, perseverance and processing. It’s about gathering all the information you are able to gather yourself. It’s also about asking (whoever you need to ask) questions over and over again until you feel satisfied with the answers you are given. Then after thinking things through, you make the best decisions you can based on what you know and move forward.

Congrats on the upcoming speech, Marie! You have been “quieter” than usual and I’ve been a little worried about you. Happy to see you are out and about giving talks!! ;-)

Jan and Julie hit on exactly what I was going to say: You have to educate yourself about your “condition,” whatever it may be, in order to advocate for yourself. You need baseline knowledge in order to ask the appropriate questions that lead to advocacy.

If you go to the doctor and everything he/she is saying is hard to grasp or understand, you’re not educated enough about your condition! Yes, it’s hard work advocating for yourself. And if you don’t have the energy, you’ve got to assign that responsibility to someone close to you who is good with the details. Advocacy is all about details. Only when your questions are answered, and they make sense to you, can you fully say YES this treatment makes sense to me. Advocacy gives you cause for pause.

The end result of advocacy is empowerment. Sweet empowerment. Advocacy makes you more than just a number or statistic; you become a force to be reckoned with, a questioner. And there is great comfort in answers that make sense to you.

I agree with Renn’s good suggestions. I would further suggest keeping copies of all of your records at home and/or making an Excel file with dates, main points, changes in medications, major tests, etc. Plus keeping a computer list of all of your medications. I diminish this list as small as I can still see it and carry it in my purse. I do the same with the history list. Both Les and I carry copies of each other’s lists in my purse and his billfold.

To me, being your own health advocate means you have to take responsibility for understanding the risk and benefits for any proposed treatment. You can’t accept doctors recommendations blindly. My oncologist initially recommended ‘a moderate course’ of chemotherapy to treat my breast cancer. But after further testing and a careful look at the benefits versus risks we both agreed the risks and benefits were about equal. Therefore, I opted out. I think I made the right decision.

This will be a great talk. It is really important to take control and the above suggestions are great. People asked me if I was scared when I found my lump and wasnt I great going to the doctor so fast after finding it. My answer …. ” If i dont look after myself no one else will” We have to take the bull by the horns and look after ourselves by asking questions, millions of them. Talking to people who have experience of the different illness, cancer, depression….. our actions, when looking after ourselves and knowing what works for us, give us strenght and those that are around us. I have a diary that I write all my questions etc in. Was and si my life saver.

Being your own health advocate requires that you research about your condition and try to seek out others that have information to add. It is not being afraid to ask questions if you don’t understand something being said, and also getting a second opinion. I always ask the Doctor if they wouldn’t mind if I went to someone else for a second opinion so that they understand that I am not trying to undermine the proposal of treatment they are recommending. Because there is so much to understand with a cancer diagnosis, and at the beginning of any new information there is so much to digest, it is a good idea to bring a friend to an appointment with the oncologist so that they can take notes and help you remember what was said. Also come prepared with questions that you have from doing your research and speaking with others that have have been treated with your type of cancer. Make decisions that you think work best for you and take the time to feel comfortable with your choices even though your first instinct is to get the cancer out immediately. I know you are going to do a great job speaking about this topic Marie and I look forward to hearing all about it.

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". . .and the world cannot be discovered by a journey of miles, no matter how long, but only by a spiritual journey, a journey of one inch, very arduous and humbling and JOYFUL, by which we arrive at the ground at our own feet, and learn to be at home."
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